MyLymeData is one of the largest patient-driven registries in the nation, with over 16,000 patients enrolled. It was created by patients, is run by patients and will address the issues that Lyme disease patients care about. MyLymeData Viz provides the community with results from MyLymeData. If you are enrolled in MyLymeData, we thank you for providing the data that will accelerate the pace of research in Lyme disease. If you are not enrolled, please enroll today.
We are pleased to present the Clinician Barriers to Providing Care Chartbook summarizing key points from the published study. Download the chartbook to learn more about clinician barriers to providing care to Lyme disease patients and why patients can’t get the care they need.
About a third of Lyme patients participating in MyLymeData’s COVID-19 Vaccine Survey said they have been vaccinated. MyLymeData participants reported slighter lower rates of COVID vaccination side effects than those reported by the general population.
Lorraine Johnson, CEO of LymeDisease.org presentation about what we need to do as a community to accelerate the pace of Lyme disease research and why I believe involving patients as research partners is essential to ensure that research addresses questions that are important to patients.
The Centers for Diseases Control and Prevention recently compared its annual surveillance Lyme numbers [those that meet the agency’s narrowly defined case definition] to the number of Lyme cases tallied in a major insurance claims data base from 2010 to 2018. Their study concludes that
Research Disadvantaged Diseases Create Research Engines Using Patient Registries Chronic Lyme disease is a research disadvantaged disease. Compared to other diseases very little clinical research has been conducted—particularly for the treatment of chronic Lyme disease where patients remain ill for six or more months following
One of the questions we have sought to answer through our MyLymeData patient registry: Why do some people improve substantially with antibiotic treatment, while others do not? Our recently published peer-reviewed study of over 2,000 participants from MyLymeData begins to answer those questions.
COVID-19 has disrupted life throughout the world for half a year now. In May, MyLymeData launched our COVID-19 Impact Survey to learn how the pandemic is specifically affecting the Lyme community. The survey covers topics like COVID diagnosis of MyLymeData participants or those in their
Earlier this year, MyLymeData kicked off an on-going gender bias study with Dr. Ray Stricker presenting on the topic. I introduced his talk, focusing on the broader issue of gender bias in research—which has become much more widely recognized generally.
LymeDisease.org was founded 30 years ago as a non-profit grassroots organization grounded in the principles of patient empowerment, participation, and self-determination. Our patient registry project, MyLymeData, is part of this grassroots effort to amplify patients’ collective voices in patient-led research. MyLymeData is patient-led research The
We are pleased to present the 2019 Chart Book for the MyLymeData patient registry. MyLymeData has enrolled over 12,000 participants and is currently among the top 5% of patient registries in the nation. The report captures information about patients with chronic Lyme disease that was
MyLymeData surveyed patients on topic of privacy – The results showed that Lyme disease patients face disrespect and discrimination both within and outside the healthcare system. They also worry that healthcare data might be used against them by employers, insurers, and other healthcare providers.
We asked participants in MyLymeData who were using natural treatments to tell us whether they were very effective, moderately effective, not effective or whether they were unsure. This interactive blog shows how many patients have tried various types of Lyme disease natural treatments and their
